COORDINATION OF SERVICES

The following letter was sent to the Directorate of Health, the Ministry of Local Government and Modernization, Minister of Local Government and Modernization Nikolai Astrup, on 21 July 2020, as a follow-up to the meeting the Løvemammaene had with the above and Dagsavisen in June.

COORDINATION OF SERVICES.

Coordinator should not be something you have to apply for, it should be something you get. It must be a separate position, i.e. not something you do in addition to what you work as. Both healthcare organizations and municipalities must have systems that talk to each other so that the job can be done in a good way.

A coordinator should involve/can help with the following:

• Contact various aid agencies on behalf of the family
• Call for responsibility group meetings, ensure that the responsibility group consists of the right people, lead the responsibility group and coordinate IP
• Follow up on what is agreed upon at responsibility group meetings
• Coordinating the child's appointments by keeping in touch with the agencies surrounding the child, ensuring that, as far as possible, several appointments are brought together on the same day (if it is possible for the child, of course) and admonishing insufficient follow-up
• Contact the family regularly to find out if there is anything they need help with and to investigate what rights they have
• Ensure that the family has enough relief, aids and necessary services around them
• Write applications and write complaints
• Order equipment from the treatment aid center and pharmacy
  (where there is a need and possible to assist, e.g. with fixed, standardized orders and language barriers)
• The coordinator should work so closely with the family that she/he knows the child and the family's needs, and follow them over time
• Must have access to a joint digital calendar for the child and parents, so that the coordinator can follow up and coordinate where necessary
• The coordinator must have proper guidelines to adhere to and receive good training (preferably courses, relevant education)
• A coordinator should have his loyalty with the child and the family
• Families must have the right to change coordinators
• Coordinators should have competence in legislation and the system in addition to competence in what it is like to live with children with complex challenges, knowledge of family life, crisis management, case management etc.

Coordinator should be considered and made into a new professional group with courses or education that can be taken, where system, legislation, CRPD and human rights, ethics, the child's perspective, including children and attachment, as well as family life with a state of emergency/crisis management are part of the education.

As the legislation and national guide are today, it is not descriptive or comprehensive enough to live up to the meaning of the scheme. As long as municipalities can "throw" coordinator positions on top of already full positions, as long as the coordinator is not given their own education/training, and as long as the coordinator has neither a digital calendar nor decision-making authority, the role itself will still fall to the parents. This is unfortunately the experience of many of our members.

I would like to take this opportunity to show you a real example of one day at my place, by showing you my phone log from one day in June. Would like to remind you that this comes on top of everything else (medications, treatment, other nursing and caring tasks, normal household tasks and parenting tasks, etc.)

Unfortunately, this is not unusual, in fact rather guaranteed to be recognizable to the vast majority of parents in my situation.

We have a coordinator, but our coordinator will never be able to handle this phone list without the right tools, access or expertise. Families like ours depend on having resources and strength themselves, enough knowledge and good language, in addition to zealots who do the little extra, who go beyond working hours and capacity to help us. It shouldn't be like that. 

Coordinators should have enough education, time, access and authority to actually be real helpers for us. There will be no improvement until this is given enough attention and serious measures that actually work - and not just look good on paper. It must be legislated with a clear regulation (the one that exists now is far too bad!), and earmarked funds must be given to establish entire coordinator positions in the municipalities. Requirements for personal experience or e.g. health-related education, as well as designing and establishing a separate coordinator's course in collaboration with experienced consultants, which must be mandatory for all the country's coordinators. The course must be the same whether you are in Tromsø or Oslo.

DESIGN OF SERVICES/PERFORMANCE

When municipalities are to design services and offers for people with chronic illness/disability and their relatives, there should be a requirement to include experience consultants in the work. An experience consultant is a person who themselves has a chronic illness/disability or is themselves a relative, and thus has invaluable in-depth knowledge, competence and experience in the field. How else are you going to manage to create good solutions, services and benefits for the people concerned, if they are not included in planning and design? 

FAMILIES WITH ANOTHER ETHNIC BACKGROUND

Through our work, we unfortunately experience that families with sick/disabled children who have a different ethnic background, and often with language challenges, become double minorities and are exploited in the worst way by the municipalities (and NAV)!

Lack of knowledge of Norwegian, little knowledge of rights and legislation, where to turn etc. means that these families receive very little help or are completely without help in a very difficult and challenging everyday life. As a result, they often fall completely outside and live very isolated, while at the same time the wear and tear becomes terribly great. Municipalities and specialist health services should have their own coordinator/social worker (and the necessary interpreting service) with knowledge of these barriers, who work purposefully and systematically to ensure precisely these families' rights, so that they have the opportunity to integrate, study, take up work, attend leisure activities and other social involvement, and not least living an equal and free life.

The lion mothers have set up a separate committee that will work to improve rights, access and quality of life for this group, because we see with great despair that families are disintegrating, deprived of quality of life and work opportunities due to lack of support and assistance schemes.

STOP BETWEEN IMPORTANT INSTANCES

A major point of frustration for many families is the lack of interaction between the specialist health service, NAV and the municipality. Here it often stops completely, and this helps to make all coordination extremely difficult. Much of the reason is, of course, a lack of digital tools, but other factors also come into play.

It is e.g. big difference between the work tasks of the patient coordinator at the hospital and the coordinator in the municipality. 

according to national supervisor The hospital coordinator has the following role:

• follow up the patient and the user and ensure coordination of the offer during the institutional stay
• interact with the contact doctor about patients who have been appointed this
• interact with service providers outside the institution
• report the need for an individual plan to the coordinating unit in the municipality
• ensure progress in the work with the individual plan in collaboration with the coordinator in the municipality
• initiate collaboration meetings with the municipality or others who will follow up after discharge

But in the hospitals, the coordinators have more than enough to coordinate appointments for all patients in the current department. We can confidently claim that families who experience good coordination in hospital (e.g. through a contact nurse) are the exception, not the rule. There is little or no coordination across departments for the individual child, and almost no coordination in collaboration with the municipalities. For a child who needs awake night care, it does not happen that the hospital and the municipality talk together in advance or during a hospital stay to plan. This once again falls to parents to organize, if they even know about the right. 

We strongly believe that the hospitals' children's departments should have their own coordinators for children who need long-term follow-up and treatment in hospital (beyond the ordinary patient coordinator), who in turn work closely with the coordinator in the municipality. Children in hospital and their families have, through the legislation, several rights that must be safeguarded, including the right to a contact doctor, the right to activation and stimulation, the right education, relatives and siblings' right to care and parents' right to relief. A real collaboration between coordinators in the specialist health service and the municipality could make this possible to carry out in practice, because there is still a long way to go before we experience these rights being fulfilled. 

According to the same supervisor, the municipal coordinator has the following role:

• ensure informed consent from patient and user for the start of the planning process and information exchange
• make arrangements for the patient, user and possibly relatives to participate in the work
• clarify responsibilities and expectations
• ensure good information and dialogue with the patient and user, and possibly next of kin, throughout the process
• ensure comprehensive mapping based on patient and user goals, resources and needs
• ensure good interaction between the actors in the health service, including with the GP who has medical coordination responsibility, as well as with relevant service providers in other sectors
• ensure coordination of the service offer and good progress in the work with the individual plan
• ensure common understanding of the goals in the planning process
• initiate, convene and possibly lead meetings related to individual plans and coordination
• follow up, evaluate and update the planning document
• follow up and evaluate the work process

In the municipalities, as mentioned, the coordinator positions are often on top of an already 100% position as something else entirely - they don't have enough time. The municipal coordinator also does not have access to the child's plan and follow-up in the specialist health service or other state services (such as NAV, orthopedic workshop, specialist dentist, etc.). They simply do not have the time or the tools to be able to fulfill the role as intended. The points above look dreamy great on paper, but then so does it. The vast majority of the coordination job inevitably and unfortunately falls on the family, even if the coordinators would like to and try to do what they can. 

In order to give families with chronically ill and disabled children real help and relief in dealing with the "system" through interaction and coordination of services, the following must happen:

• Today's regulation must be replaced by a clearer regulation that contains a clearer description of the coordinator's role as described in this letter
• Several full coordinator positions with courses/education at the bottom in the municipalities
• Digital tools with access to a calendar that interacts across agencies
• The coordinator must be given enough authority to be able to ensure good services for families
• Several full coordinator positions for children and young people in the specialist health service

These are absolutely essential points to ensure that real interaction and coordination actually moves from paper to reality. Funds must then be set aside for this.

With best regards
Bettina Lindgren
on behalf of the Lion Mothers

IN we sent the same letter with the following attachment which deals with what we believe should be a right to a companion certificate regardless of age, as well as the very demanding documentation requirement that many families have to deal with when meeting with the public assistance system. You can read the recordings below by downloading the attachments.